Thyroid lymphoma - should I be concerned?

[Sue9823]

Was diagnosed with Hashimoto’s (multinodular with goiter) and Rheumatoid arthritis resulting from Sarcoidosis in 2000 and have been taking Levothroxine 0.1mg for years. Last Spring I noticed a change in the size of my goiter and convinced by GP that something was not right.  An ultrasound in August 2009 showed an indeterminate hypoechoic mass measuring 2.5cm x 2.3cm x 1.5cm and the thyroid gland had a volume of 20cm3.  I was referred to a specialist.  A subsequent u/s in October 2009 showed the volume had increased to 30cm3 with the left lobe being double the size of the right and the nodule being a solid mass located in the centre/left of the gland measuring 2.6 x 2.7 x 2.0 cm  The lump in my neck is also now visible to the eye and I can feel that is larger still. I was sent for a FNA biopsy in December 2009.

On December 23rd my family doctor said he thought that the report didn’t make sense -that the results indicated I have possible Hashimoto’s!!!  We already knew that! If the treatment for Hashimoto is Levothroxine why are these new alarming symptoms arising now?  Was he putting me off until I see the specialist again?  My TSH has ALWAYS been normal all along. The original diagnosis was based on low free T4 & T3 values and my physical symptoms. My mother died of tonsillar cancer at my age (55 yr) and I am concerned about possible thyroid lymphoma despite all the doctors telling me her cancer is no way related.  I am now unable to keep warm, my basal temp is 96, my voice is hoarse, I am being treated for major depression and my ferritin level is 21. My vitamin D level was 0.1 in August and I have been taking 1000 iu since then. I am so exhausted that going to sleep seems like a chore! I have also been suffering drenching cold night sweats, despite estrogen therapy, for several years.  I have a new hoarseness to my voice and have difficulty swallowing and frequently find myself choking on my own saliva.  Am I right to be concerned at this point? Should I push for thyroid removal?  How soon?

[utahmomma]

Find a good endocrinologist who specialized in thyroid disorders (most do not).  If you can't find an endo that fits the bill, find a good ENT.

Hashimoto's does NOT rule out cancer and if you are having such severe problems (especially the growth of the solid nodule and the choking feeling) it's time to consider getting the thyroid removed.  It's up to YOU to make that decision.   I jumped right to a surgeon after seeing my ultrasound before ever having an endo or ENT (I found them after the surgery to manage my meds)

BTW:  Two of my sisters had FNAs which were benign (but showed their Hashimoto's) yet both of them had thyroid cancer.

Trust your gut - that's what gets most of us the help we need.

Utahmomma
papillary carcinoma '03, second surgery '04, recurrence and RAI '06
three sisters with papillary carcinoma
another sister and daughter with precancerous nodules (daughter had one compressing her jugular)

[Barb135]

I know how "nonchalant" doctors can be and I truly sympathize with you.  Whenever new symptoms arise, it can be scary.  

Your initial post said you were diagnosed with Hashimoto's -- how can that be, if you don't have antibodies?  Hashimoto's is an autoimmune disease and if you have it, you would have the antibodies. I was told that it's a combination of both antibodies AND multinodular goiter that brings the diagnosis of Hashimoto's (i.e. it takes both to form the diagnosis). I don't know a lot about rheumatoid arthritis, but since it's another autoimmune, you should have SOME form of antibodies.  

I strongly recommend that you get a written copy of any lab reports and keep them for your records - that's very important AND those are your records, so your doctors are obligated to give you copies upon request.  

[Sue9823]

Thanks for your comments Barb.  I don't know the actual numbers for my TSH/T3/T4 because both my endo and GP says they are normal and have been since I began the 0.1 mg of Levothyroxine.  They were not concerned when I said I felt something was wrong and sent me for an ultrasound just to appease me.  

My initial symptoms were treated with the Levothyroxine for many years that's why I became concerned when the new symptoms began (trouble swallowing, lump growth, hoarseness, coughing, breathing problems). I don't have any antibodies for Hashimoto, but I do have other autoimmune issues - Rheumatoid Arthritis with a raised ESR which is controlled with anti-inflammatory meds.

The doctors were so nonchalant about the whole thing that they only sent me for the second ultrasound because they were sure the technician had made a mistake.  It was only when the second report came back that they realized something was growing despite the meds and finally believed me.

[Barb135]

Levothyroxine is the treatment for hypothyroidism not Hashimoto's.  Just raising your thyroid levels won't treat the Hashimoto's.  Hashimoto's is caused by antibodies and the goiter;  levothyroxine raises the levels of thyroid hormones and alleviates hypothyroid symptoms.  

I can't answer your question about thyroid removal because I'm not that familiar with the u/s report; however, I too suffered a lot of the same symptoms, but they have lessened considerably since beginning thyroid med.  Have your doctors talked about removing your thyroid?  

I'm sure there are some on this forum who can answer your questions about the ultra sound report.  I, too have Hashimoto's, with multi nodular goiter, but have no dominant nodules.  I take a daily dose of selenium to help keep the antibodies "calm" and that helps a lot with swelling and inflammation.  

What are your current Free T3, Free T4 and TSH levels?  Please include the lab's reference ranges, since labs use different ranges, based on the method of running the tests.